Monthly Archives: December 2016

Vacation Melancholy

We drove away from home this morning, leaving Jack at home with a sitter, which, predictably, left me conflicted. I was excited to leave, to take my other children on a little trip where we are doing normal things, like going to movies and out to eat, after a longer car ride than Jack would’ve been able to comfortably handle. In order to do regular vacation-y things for a few days, we have to leave Jacky behind.

Of course, we haven’t left behind autism or profound anxiety, because where the two little boys go, those things go too. But the little guys can do things that Jack can’t, and sometimes, I think we need to expose them to a world outside of our carefully structured, self-contained life at home. We need some family memories that aren’t about things getting broken in our house.

The whole situation makes me feel both relieved and sort of blah. I’m relieved we have respite help, and that we can get away. But a mom is a person who wants every good thing for her child. I want Jack to be able to do everything with us. I want him to be able to talk and behave in public and wear regular clothes and eat a variety of foods. I wish he could do all the things.

I’m sad that he can’t. His life is so limited and limiting. I feel very meh about all of it.

How hard must it be to be Jack? To not have a voice. To be left behind. To struggle to even wear shoes.

Multiple times this Christmas season, I thought, “Jesus was born. He lived and he died so Jack doesn’t have to stay disabled.” It was a warm, glowing thought. It’s so straightforward that many people find it overly simplistic.

But to me, the concept of the atonement is much bigger than I feel I can fully grasp. I don’t know how Jesus’s suffering washes away every disappointment—even my dumb first-world problem of being glum we can’t take a little trip all together.

I don’t know how every bad thing can be swallowed up by that one act of love.

But wow. I’m grateful it is.

I know it is because when I experience this kind of depressing evaluation of how our family operates, I think of Jesus choosing to die, simply so Jack wouldn’t be alone or forever stuck in this nonverbal, mentally disabled state, and so I wouldn’t be hopelessly sad about the fact that my family can’t take a vacation together.

I don’t know how he did it, but Jesus did it—for us.

This is my Christmas gift. It’s Jesus. And the way he takes away the sting of the weirdness of our life.

Merry and Bright, Maybe

It’s Christmas Eve day and it’s raining. Tonight it will turn to snow—lots of snow—and keep snowing into tomorrow.

A white Christmas is magical. But my expectations about this holiday are modest. Will Jack behave? Will he be overwhelmed at the family parties? Will he get cabin fever since he doesn’t go out in the snow? Will this weekend be harried or happy?

A positive attitude and planning only goes so far in the face of someone else’s behavior. I can’t change it, only accept it, cope with it, perhaps attempt to influence it, but with no guarantees.

We aren’t sure we will even make it to church on Christmas Day since we won’t have any sitters for Jack and our ward is combining with the neighboring ward for sacrament meeting. This means it will be crowded. There will be lots of singing, which I personally love, but which may simply provide Jack repeated opportunities either feel sensory overload or to applaud after musical numbers as he did last week when the Primary children sang.

In years past, my complex feelings about Christmas stemmed from my expectations. When I expected something sweet and magical, I was usually disappointed by something real and raw and frenetic—by something flawed. So I lowered my expectations, which surprisingly resulted in two outcomes. When I expected something less than ideal, I found myself a) less excited about the season and b) pleasantly, genuinely surprised by anything positive at Christmas. This is what I did: expect practically nothing, anticipate less, accept all of it, and sometimes enjoy the fleeting gifts and unexpected miracles. There was nothing else to do.

There were two Christmas Eves when Jeff had to stay home with Jack all evening because he was too violent and unpredictable. I took the other boys to my parents’ house and Grandma Snow’s house and felt like I had cleaved my heart in half with a butcher’s knife. We were divided as a family, not because of geography, but because of disabilities. It was disheartening.

For the past dozen years, Christmas has never not been complex and shifting. These were seasons where I felt sad, hopeless, depressed, uninspired.

Yet I can identify memories which broke through the difficulty, letting in pin pricks of light through the dark shell of Life with Severe Behavioral Disabilities.

There was the Sunday when two men at church sang “O Holy Night,” and I felt like my body was literally buzzing with joy and gratitude. There was the winter morning I sat on the floor by the fire and read A Christmas Carol in one sitting, and had renewed hope for the process of living.

There was the magical evening after Christmas five years ago when Truman was released from the NICU, and my whole family was together in one place. That was the year Jeff and I sat on the couch with our three big boys between us and watched an entire movie together (Fantastic Mr. Fox), without any behaviors, and I tasted heaven.

A backward look makes me wonder if the best Christmases aren’t the ones when things flow with precision and perfection.

My life seems to indicate that the truest moments of Christmas hope burst through the hard scales of ugly times and offer a ray of light in the gloom.

I’m Lighting the World, yo

This could end up being one of those We Had the Worst Day Ever with Jack posts that unfortunately tends to populate this site.

This is because Saturday was one of the worst days ever with Jack. His right ear appeared to have blown out due to infection. We saw all the signs, but were loathe to take him to Instacare on a weekend, because neither Jack nor the medical staff in an unfamiliar place do well together. We need familiarity. Familiarity isn’t open on evenings or weekends.

We administered antibiotic ear drops, as the ENT has instructed us to do when we see drainage. We gave Jack pain relievers. We took him on thousands of rides. He (who weighs 140 lbs) took a nap on my lap.

He lunged at us, throwing things, breaking the couch, headbutting walls and windows, and screamed.

Saturday lasted for roughly seventeen weeks.

It was the kind of day where we did nothing but survive. Jeff and I were in a heightened state of tension, waiting for the next outburst, or med dose, or upset to the delicate balance of Jack is Happy Right Now, Nobody Move or Speak or Heaven Forbid Ring the Doorbell.

I’ve been following along with the #LighttheWorld campaign, applying the daily ideas for centering every day on Jesus and the essence of the season. I like the way it has reoriented the Christmas season for me, making Jesus the focus every day of the month. This is what I need more of—less busyness, less stuff, less shopping, more giving in a personal sense. Also more thinking about the reason we don’t have to live in sadness and difficulty forever.

I’ve noticed that when I’ve considered how to consciously attempt to #LighttheWorld, I can see that I’m already doing much of it. In my house. This is not because I’m saintly, but because my children require it.

I’m not being self-congratulatory.

I can thank Jack, mainly, for giving me the opportunity to minister all the time, even when I’m not in the mood. Just always.

One of the days last week emphasized being humble, like Jesus was humble to the will of his Father. I couldn’t think of anything to specifically DO that day to demonstrate humility. I listened to Christmas music while doing laundry, sweeping, unloading the dishwasher, making beds, wiping down counters, and picking up Truman’s 10,000 pvc pipes littering the house (he tells us he will one day be a plumber and I believe him). I thought about the fact that it’s a humbling thing to clean up the same messes, day after day. To cook food that people complain about. To wash the same batches of laundry, over and over.

Taking care of small people is an exercise in humility because personalities and wills and opinions are involved. My children keep me humble because their needs far exceed my abilities.

On that particular #LighttheWorld day, I guessed that my solution could be deciding to be humble by not resenting the repetitive difficulty of raising complex children. I could accept it, if not joyfully, then with neutrality and an open mind. That was my offering. I felt pretty okay about it.

And then Sunday dawned, bitter cold and clear. Jack was happier. The drops appeared to be working. Junior came with us to church. Jack sat nicely, laughing periodically during sacrament meeting. When the Primary children finished singing a Christmas song, Jack applauded.

Tomorrow’s theme is “Jesus calmed the storm and so can you,” to which I say sure. I will be the calm in the face of my children storming and screaming about all the things. I can do that. Perhaps Jack will clap for me, too.

 

 

All the Dreams We Cannot Flee

I had an eerily vivid WWII-era-ish dream. I am not making this up. It sounds made up. But I dreamed it and it was awfully real.

Even in hindsight, writing it down is disconcerting as it brings the associated stress right back to my psyche.

I dreamed my sister and I were in a European village, where we apparently lived. There was knowledge of an imminent threat coming, so we grabbed food and coats and left our house. We were walking across a field, our arms full, when I said, “I forgot my boys’ meds! And I have no diapers for Truman.”

Amber kept walking. “We can go back later and get them,” she reassured me. I knew we wouldn’t be going back.

The beginning of the dream felt like a compilation of every World War II story of Nazis coming for Jewish families and yanking them away from their lives in a matter of minutes. The difference was we hadn’t waited for anyone to come and tell us it was time to go. We left before it could happen.

We walked briskly through the town. We agreed to meet at a bakery (which sounds like basically all the stories ever written about German-occupied France) a few blocks away.

“Split up,” Amber said, under her breath. We were being watched. I turned right down an alleyway and she continued straight on. The alley ended in a T and I went left. I noticed a large man ahead standing by a tall fence, watching me approach. I ducked down another alley. I saw through the windows in the warehouse between us that he was heading around the other side of the building to cut me off.

I ducked down low and went back the way I came. My heart blared in my chest. “When did my life become a Holocaust movie?” I thought as I crouched and ran.

The dream shifted and I was now sitting on the floor of the bakery, talking to my mom and sisters about what we should do. I looked through the plate glass window at the front of the shop and noticed that Truman had gone outside to play on the path. Just then, a man grabbed him and began carrying my wailing, terrified five-year-old away.

“He’s grown up in safety and doesn’t even know to hide and be afraid,” I thought as my mind raced. What should I do? The man was a few yards off with Truman, and had stopped to talk to some people.

I went outside and called to him, demanding that he give me my son. He set Truman down and walked toward me, large and menacing. We were face to face. He was taller. Fear liquefied my bones.

I thought, “This is it. He’s going to kill me.”

At the same moment, I also thought, “What does it matter? I couldn’t live with myself if I let him walk away with Truman.”

The dream ended as I looked him in the eye and said, “You will give me back my son.”

I woke up and felt that sense of tremendous relief that one feels when a bad dream turns out to be only a nightmare, and not reality. The adrenaline ebbed. But my mind was troubled.

This dream was distressing. We were in a war. Evil men were hunting us. I didn’t have meds or diapers or even the ability to protect my children from tyrants.

Why did I have this dream?

I feel that the message was entirely, inwardly personally related to my life.

Later that morning, I considered the dream and I remembered facing off with the menacing man who had taken Truman. I thought about how I’d stood up to him, despite my relative weakness and fear.

I commended my dream self for bravery. Good job, dream self.

Even as the dream played out, I remember thinking that the rural European-town-caught-up-in-a-war was a symbolic setting. It is something I could understand from plenty of reading on the subject, and from cultural osmosis. I don’t think my subconscious came up with this dream on its own. God sent me this dream to show me something.

I am not literally in a war. But figuratively? Yes.

I am fighting anxiety, rigidity, developmental delay, autism, food aversions, flexibility aversions, toilet aversions, and ridiculously aggressive behavior. Jack has fought me through every one of the seventeen documented ear infections he’s had in the last thirty-six months.

I see my sons’ fears. I see past their fears to their hearts. There is no blame—only empathy and a desire to help them overcome. I want them to feel peace the way I do.

My own fears disappeared when I slowly realized that Jesus knows how I feel, and that he is helping me manage the logistics of war.

My dream was about me seeing that God knows me and my war.  I’m capable of standing up to powerful, antagonizing forces because Jesus did it first and he is at my side.

Sometimes life is beautiful, and occasionally, we walk through a landscape of horror.

Because I’m not doing it alone, I have the will to face it.

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Dreamscape

I’m having the wild dreams again.

It’s obvious that my dream life sometimes rears up like a sleeping dragon that is tired of dormancy. The dragon has launched, guys, with fire coming from its nostrils, reptilian wings flapping.

All the anxiety comes out in the dreams. They are an ethereal, visual manifestation of my fears. And yet they also feature my subconscious saying things about what I am capable of.

Exhibit A: The mad driving skills dream.

A few nights ago I dreamed I was driving my Odyssey with Jeff, Jack, Junior, and my friend Brittany (who lives several thousand miles away, but why not) as my passengers. We were in my neighborhood, and suddenly turned on an unfamiliar street I’d never even noticed before. I use the term “street” loosely. It was a rutted out disaster of a dirt road.

In an effort to not get stuck, I gunned my minivan, employed evasive turning maneuvers, and at one point, even drove across a “bridge” made of two unconnected logs spanning a muddy, swollen riverbed.

“I don’t know how to drive in these conditions!” I yelled at everyone in my car. “This is insane!”

At this point, I was “driving” in a flooded, twisting ditch that resembled the lazy river at the local rec center.

“No one taught me how to make a minivan float!” I growled.

Jeff, riding shotgun, said, “You’re doing it. It’s fine. You made it through all the ruts and across that log bridge thing and this is working too.”

That’s where the dream ended.

My sister, Kate, recently noted that Jeff plays a pivotal role in my dreams/life/blog, to which I solemnly nodded as one can only do when one’s blood relative speaks the truth, unembellished.

She pointed out that whenever the shiz is flying and anxieties are high, Jeff usually deadpans some calm remark that makes sense of everything and turns the situation around. He does and she’s right.

Then I told this dream to my sister, Sarah, who squealed, “That’s your next post! There is symbolism all over the place! It’s a gold mine!”

It’s practically ridiculous, the obvious parallels between the driving dream and my actual life.

I’m driving a van over a booby-trapped death road = I’m raising three children with special needs + one regular teenager (being a teen is arguably kind of a special need, in a way).

I’m driving and Jeff is in the passenger seat = I’m the mom and he helps whenever possible, but is also the dad and is, by definition, often out bread-winning and such.

I had a carload of people I was responsible for = I feel responsible for a LOT—of people and outcomes and laundry and schedules and futures and dental appointments and neuroses.

We were close to home, geographically speaking, and yet it was a wilderness terrain = I am parenting, much like a good part of the world parents, and yet it feels remote and dangerous. It’s parenting 2.0.

I was yelling = I yell, irl.

Jeff was calm, diagnostic, and analytical = Jeff is Engineer Husband and Dad.

Things looked bizarre and, frankly, bleak. And yet, I was doing it = Things often do feel quite bizarre and muy bleak. And yet, we are doing it.

We are making it work, because God is helping us make it work.

I got a Christmas card from my dear friend, Jana, this week. Jana is one of the most spiritually astute people I have ever known. She teaches me something vital every time she opens her mouth. Her letter filled me in on their lives and concluded with the statement, “I have realized that I am completely dependent on God.”

Jana is a beacon of faith and wisdom in my life. And she functions in complete dependence on God.

My Dukes of Hazzard dream driving success wasn’t because I’m great at handling a minivan. We didn’t sink because God is, in a manner of speaking, the Odyssey.

He is the vehicle carrying us through turmoil. He’s put me at the wheel, and told me to drive, but he is the frame holding us up and the wheels moving us forward.

He’s seeing us over the logs spanning the gulf.

He’s holding us up in the flood.

 

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Nativity

Tonight for family night, we ate brownies first because Jack would not have it any other way, before talking about baby Jesus—specifically why there was a baby Jesus.

I asked Truman to set up the little wooden creche. Charlie joined in. Finally Jack came and hung the shepherd by the crook of his staff on the nail above the stable meant for the angel.

In the enduring spirit of autism, the boys lined up all the figures in a straight line.

Jack tipped the manger on its side. The donkey was upside down. The angel, bumped from her spot above the stable, lay prone on the ground.

For one and a half seconds, I thought about fixing it.

But I liked that the nail through the shepherd’s hook gave him a birds-eye view of the stable, as he held on tight. I liked that everything and everyone was a jumble, with the baby Jesus quietly resting on his side.

Because life is a jumble. It’s setbacks and surprises and periods where you def feel like you’re at the end of a line of people standing awkwardly around an angel lying flat on the ground. Also there is a donkey with his feet in the air.

Life isn’t the Christmas Pageant version of the Nativity.

It’s the special-needs family home evening version of the Nativity. Where the unfolding of things isn’t following stage directions.

But Jesus is still there.

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Awfully Monday-ish

There is something awfully Monday-ish about a Monday in winter when it’s grey outside and the house has exploded after Jack’s weekend of discontent and I have piles of things to do for my classes and managing Jack’s support services.

My relief at seeing the boys get on the bus of a Monday morning is as great as my sense of I’ll-never-get-everything-done-before-the-bus-brings-them-back. And Jack left a steaming pile of you know what in his bedroom for me to find later.

The only reason I am writing on a Monday afternoon, an hour-ish before the boys return is because of Jeff.

He cleaned up the steaming pile. He scanned all the support services documents and printed them off and cross-checked them. He saved this grey Monday.

I’m glad that if it has to be winter today, at least it’s December.

And that we have a bus that provides front door service for the two middle boys.

And that we are all healthy at this moment.

 

 

Off Day

We are having an off day. Saturdays are always already “off,” but this one is even weirder than all the rest.

Jack has been a bear—a tired, grumpy, flailing bear who would not nap, despite me lying next to him on my bed for a very long time as we watched a sixty minute youtube video of a woman vacuuming her living room carpet. He soaked it up. It was stimming without the actual stimming. But he never did sleep.

I fell asleep for a few minutes. When I woke up, she was still vacuuming that rug.

Charlie and Truman were balls of anxiety, first that Santa was going to drive past our house on a fire truck at an unknown time, and second that they might somehow not hear the blaring sirens and the booming honk of the horn, and thus miss Santa Claus. And so they screamed about warm clothing and being outside and hearing the siren but not actually seeing Santa.

We saw Santa.

We took Jack on two long rides. We drove Henry to merit badge class and back. We did laundry.

Jeff and I went on a date, which ended up being a bizarro world version of a regular date. Dinner was meh. I couldn’t finish it. We left forty minutes into a disappointing movie. We came home to Jack asleep on the couch well before bedtime (meaning it will probably be a dance party in the wee hours) and Charlie losing his mind over every single thing.

Aside from seeing Santa, the day has felt like a really really bad dream sequence.

What do you do when you have a day that isn’t outright tragic, but which distorts reality into a circus freak show?

 

 

 

Dear God,

I don’t know what to say.

Sometimes I get repetitive and ask for all the same things, after glossing over my thanks for the huge things.

Sometimes I fall asleep when I pray.

You already know this.

I’m sorry.

Sometimes I pray from the perspective of my children, asking that we can all be good boys and not be consumed by anxiety. And that we can go in the potty.

And sometimes (occasionally,) I pray aloud. But usually, I pray silently, in my head.

I know you know all the things I need—that we need. Even in the worst times, you’ve given us exactly enough to keep going another day. I can recognize the pattern.

It’s taken me a long dozen years, but I am starting to see.

So this prayer will be solely about me counting my blessings.

Thank you for the helpers—for the behavior therapists, our behaviorist, our support coordinator, the bus drivers, the teachers, the aides, the doctors, the OTs, the SLPs, and the legion of sitters over the years. They make life beyond a scraping existence possible. They are dear to me.

Thank you for the snow—for unveiling winter’s subtle beauty. Thank you for seasons that dress the earth differently and make it feel new.

Thank you for heaping change on my family, for taking us from regular to comfortable to dismal to train wreck to phoenix. Thank you for holding us up through the process. Thank you for the chance to grow.

Thank you for Jesus.

Please thank Jesus for me.

I love you both,

me.

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